SyringomyeliaSyringomyelia (sear-IN-go-my-EEL-ya) is a disorder in which a cyst forms within the spinal cord. This cyst, called a syrinx, expands and elongates over time, destroying the center of the spinal cord. Since the spinal cord connects the brain to nerves in the extremities, this damage results in pain, weakness, and stiffness in the back, shoulders, arms, or legs. Other symptoms may include headaches and a loss of the ability to feel extremes of hot or cold, especially in the hands. Each patient experiences a different combination of symptoms. Magnetic resonance imaging (MRI) has significantly increased the number of syringomyelia cases diagnosed in the beginning stages of the disorder. Signs of the disorder tend to develop slowly, although sudden onset may occur with coughing or straining. If not treated surgically, syringomyelia often leads to progressive weakness in the arms and legs, loss of hand sensation, and chronic, severe pain. In most cases, the disorder is related to a congenital abnormality of the brain called a Chiari I malformation. This malformation occurs during the development of the fetus and causes the lower part of the cerebellum to protrude from its normal location in the back of the head into the cervical or neck portion of the spinal canal. Syringomyelia may occur as a complication of trauma, meningitis, hemorrhage, a tumor, or arachnoiditis. Symptoms may appear months or even years after the initial injury, starting with pain, weakness, and sensory impairment originating at the site of trauma. Some cases of syringomyelia are familial, although this is rare.Surgery is usually recommended for syringomyelia patients. Recurrence of syringomyelia after surgery may make additional operations necessary; these may not be completely successful over the long term. In some patients it may be necessary to drain the syrinx, which can be accomplished using a catheter, drainage tubes, and valves.In the absence of symptoms, syringomyelia is usually not treated. In addition, a physician may recommend not treating the condition in patients of advanced age or in cases where there is no progression of symptoms. Whether treated or not, many patients will be told to avoid activities that involve straining.Symptoms usually begin in young adulthood, with symptoms of one form usually beginning between the ages of 25 and 40. Symptoms may worsen with straining or any activity that causes cerebrospinal fluid pressure to fluctuate. Some patients, however, may have long periods of stability. Surgery results in stabilization or modest improvement in symptoms for most patients. Delay in treatment may result in irreversible spinal cord injury.Investigators have found that as the heart beats, syrinx fluid is forced downward. This finding suggests a role for the cardiovascular system in syringomyelia.Surgical techniques are also being refined by the neurosurgical research community. It is also important to understand the role of birth defects in the development of hindbrain malformations that can lead to syringomyelia. Dietary supplements of folic acid during pregnancy have already been found to reduce the number of cases of certain birth defects.Diagnostic technology is another area for continued research. Diagnostic tests have improved greatly with the availability of new, non-toxic, contrast dyes. Patients can expect even better techniques to become available in the future.http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?CMD=search&term=syringomyelia+AND+human[mh]+AND+english[la]&db=PubMed&orig_db=PubMed&filters=on&pmfilter_EDatLimit=5+Yearshttp://www.nlm.nih.gov/medlineplus/syringomyelia.html 1http://clinicaltrials.gov/ct2/results?term=/disorders/syringomyelia/pubs_syringomyelia.htm/disorders/syringomyelia/xml_syringomyelia.xmlV181American Chronic Pain Association (ACPA)P.O. Box 850RocklinCA95677-0850ACPA@theacpa.orghttp://www.theacpa.org916-632-0922
800-533-3231916-652-8190Provides self-help coping skills and peer support to people with chronic pain. Sponsors local support groups throughout the U.S. and provides assistance in starting and maintaining support groups.V221American Syringomyelia & Chiari Alliance Project (ASAP)P.O. Box 1586LongviewTX75606-1586info@asap.orghttp://www.asap.org903-236-7079
800-ASAP-282 (272-7282)903-757-7456Non-profit organization that works to improve the lives of people with syringomyelia, Chiari malformations, and related disorders. Publishes a newsletter and offers other written information, videotapes, an annual conference, and other services.V224Christopher and Dana Reeve Foundation636 Morris TurnpikeSuite 3AShort HillsNJ07078informations@christopherreeve.orghttp://www.christopherreeve.org973-379-2690
800-225-0292973-912-9433The Reeve Foundation is dedicated to curing spinal cord injury by funding innovative research, and improving the quality of life for people living with paralysis through grants, information and advocacy.V41March of Dimes1275 Mamaroneck AvenueWhite PlainsNY10605askus@marchofdimes.comhttp://www.marchofdimes.com914-997-4488
888-MODIMES (663-4637)914-428-8203Works to improve the health of babies by preventing birth defects and infant mortality through programs of research, community services, education, and advocacy.V91National Organization for Rare Disorders (NORD)55 Kenosia AvenueDanburyCT06810orphan@rarediseases.orghttp://www.rarediseases.org203-744-0100
Voice Mail 800-999-NORD (6673)203-798-2291Federation of voluntary health organizations dedicated to helping people with rare "orphan" diseases and assisting the organizations that serve them. Committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and service.V236National Spinal Cord Injury Association120-34 Queens Boulevard, #1320Kew GardensNY11415info@spinalcord.orghttp://www.spinalcord.org718-803-3782
800-962-9629866-387-2196The National Spinal Cord Injury Association is dedicated to improving the quality of life for hundreds of thousands of Americans living with the results of spinal cord injury and disease (SCI/D) and their families. NSCIA, educates and empowers survivors of SCI/D to achieve and maintain the highest levels of independence, health and personal fulfillment.V240Paralyzed Veterans of America (PVA)801 18th Street, NWWashingtonDC20006-3517info@pva.orghttp://www.pva.org202-USA-1300 (872-1300)
800-555-9140202-785-4452Non-profit organization dedicated to serving the needs of its members—more than 19,000 veterans paralyzed by spinal cord injury or disease, as well as caregivers and others affected by these disabilities—through advocacy, education, and research programs.V213Spina Bifida Association4590 MacArthur Blvd. NWSuite 250WashingtonDC20007-4266sbaa@sbaa.orghttp://www.spinabifidaassociation.org202-944-3285
800-621-3141202-944-3295Non-profit association that provides information and referrals through a clearinghouse and toll-free number. Promotes research into the causes, treatment and prevention of Spina Bifida; conducts public awareness campaigns; and encourages socialization and training for people with Spina Bifida.V241Spinal Cord Society19051 County Highway 1Fergus FallsMN56537scs-nc@nc.rr.comhttp://scsus.org/218-739-5252 or 218-739-5261218-739-5262International advocacy organization that supports research, publishes a newsletter, and sponsors an international network of chapters.V916Chiari & Syringomyelia Foundation29 Crest LoopStaten IslandNY10312info@CSFinfo.orghttp://www.csfinfo.org718-966-2593718-966-2593 (Call First)Nonprofit organization committed to disseminating accurate and current information about treatments for and best practices surrounding the management of Chiari malformation, syringomyelia & related cerebrospinal fluid disorders.